Monday, March 10, 2014

Sticky webs of wrong ideas.

"Did you care about how I felt before I could type?"

That's the question Oliver asked me last week during a period punctuated with some trying moments.  As always, we find time to sit down together at the iPad afterwards and Oliver apologizes and asks for forgiveness. His struggles with impulse control cause frustration for both of us. The trick is to get through it and to a place where we both feel OK on the other side. It isn't always easy. But I'm learning how to slow down and wait until I can get to the place where my responses only come from a place of love and empathy and deep gratitude for this little guy whose struggles are often misunderstood. I'm making progress.

Last week it occurred to me that it was I who should be asking Oliver for forgiveness. I have so many words at my disposal and they are easy to come by. I can explain why I misunderstood the boy for so long, why I didn't parent from a place of presuming competence even when I thought I was, why I said what I did and how I made choices along the way. But none of that probably matters so much to a little boy who couldn't make himself understood and who only needed my wide open love, acceptance and unshaken belief.

"Did you care about how I felt before I could type?"

The answer should have been unequivocally, "Yes!" But it's more complicated than that. So much of Oliver was unknowable before he could make himself understood through typing. Of course I cared how he felt! But somehow I had also allowed myself to be moved from a place where I thought I might understand the world from his perspective. I had "othered" my own child and I didn't even know it. Whoever started the story that Autistics lack empathy, the thing at the very core of our humanness, drove a wedge between us so slight that I couldn't even see it.  The wedge reverberated: "He can't understand so I can't understand."  Over the years I knew the empathy story was a false one; Oliver felt more, not less. But the wedge was already there. Wrong ideas about autism are pervasive and sticky like cobwebs across this path we're traveling. You carry them with you long after you've broken through to the other side.

I couldn't answer Oliver's question the way I should have and he didn't offer me forgiveness. But I stand now in a place of light where the webs of wrong ideas are plain. I can't change the past but I can promise to drive out the wedge between us that falsely led me to believe that he stood so far from my own understanding. And I can join my voice with his, though it often seems small and unheard, leaving it here along the path for others who might follow.


9 comments:

  1. Laurence3:29 PM

    So moving ! your journey and the way you live it , both of you ,is so powerfull ! thank you !

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  2. Laurence, we are on the same journey!! We get a lot of strength from connections with our fellow travelers. So Thanks to you, too!

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  3. I just discovered your blog from some link on facebook and it was the "do Me a Favor" post. It really spoke to me. Thank you so much for sharing your journey. I blog myself, mostly about running, but you've encouraged me to share more about my struggles with autism in the hopes that others will find encouragement. Thank you!

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  4. Janell, thank you so much for stopping by and for your comment. I don't know where I'd be without finding the words of other moms and autistics to help me on the way. I can't wait to read yours!

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  5. jackies mama4:33 PM

    Very grateful for both the content and the timing of this post, fellow traveller. That web is so sticky and I am still very much beating myself up, but it is also a powerful and exciting time for me and my son. I feel a real shift.

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  6. Anonymous8:07 PM

    Thank you for sharing. It sounds like you are on a path of healing. We all have regrets. Mine involve losing my faculties during times where my son's late afternoon and night behaviour becomes unbearable for me. Your comment about slowing until you can get to a place of love really moved me. This can be a challenge when a child is seeking intense pressure and movemen t

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  7. Hi Christine. I came across your blog and I love it. I often wonder if my daughter is going to ask me a similar question one day. I don't know if this is the right place to ask this, but how did your son learn to type? Did you use some method to teach him or did he just figure it out? Like your son, my daughter is so bright and I have full confidence that she will learn to communicate more effectively someday (she is five and verbal, but doesn't use a lot of spontaneous language. She says what you tell her to say). Her therapists are reluctant to use the iPad too much because she is verbal and they want to push that, but I have this feeling that it might help. Right now she just uses her iPad for games, but she usually chooses educational games that are teaching her to spell words. So, I wondered if you have any advice. Are there specific apps that you use to teach children to type? Did your son know how to read first? How old was he when he started typing? Forgive me for asking so many questions! Thanks so much for this post!

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  8. Hi Amy! I'm So glad you asked! I think it is really important to let your instincts guide you sometimes. I can't say for sure if your daughter would benefit from typing or AAC, but i really don't think it practically limits verbal output. Oliver also speaks and can repeat just about anything you ask him to -- but he cannot express complex ideas with words. We tried picture based communication techniques and devices but Oliver never made good use of them. When he was nine I figured out that he could spell kind of by accident and then we moved towards typing. Oliver learned to type last July in Syracuse at the Institute for Inclusion and Communication. I know other kids who have had good success with something called RPM. I hope that helps!!

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  9. Thanks Christine. That is very helpful! I am so glad I found your blog. I'm going to keep reading. Thanks!

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